Author Topic: Protopic Withdrawal  (Read 6677 times)

0 Members and 1 Guest are viewing this topic.

Offline daisy2

  • Semi-Newbie
  • **
  • Posts: 90
  • Karma: +0/-0
Re: Protopic Withdrawal
« Reply #15 on: October 03, 2016, 11:32:06 PM »
Hello,

Just thought I would give an update on this as well.  I used protopic heavily for about 10 mos, prior to that off and on for eight years.  Mostly on my face. 

To date, my TSW on my body has greatly subsided.  the absolute worst is my face where I used protopic heavily, and I have been having major issues, with very little 'remission' 7 months in.  I was swelling A LOT in the first few months.  That thankfully is less now.  I still have oozing, peeling, flaking and massive redness, itchiness.  I also feel that my skin may be more susceptible to infections and allergies now than before.   The worst areas taking longest to heal were where I used protopic the most.


Offline 997

  • Newbie
  • *
  • Posts: 6
  • Karma: +0/-0
Re: Protopic Withdrawal
« Reply #16 on: October 04, 2016, 12:33:51 AM »
I'm in the same boat! Been using protopic heavy for years. I have also been on Dupilumab for the past 18 months. Skins great except for the face... It's been a constant flare!!! My forehead is the worst part. Hopefully it heals soon....

Offline Stinkers

  • Semi-Newbie
  • **
  • Posts: 39
  • Karma: +1/-0
Re: Protopic Withdrawal
« Reply #17 on: October 04, 2016, 04:49:15 AM »
Hi guys,

Very interesting dupilumab doesn't seem to have the same impact on protopic withdrawal!!

997 - did you use protopic on any other areas of the skin besides those you mentioned are still flaring? I'd like to know if areas of lesser usage of protopic have been moderated by dupilumab and its just sensitive heavy use areas like the face that haven't, or if you think it's had no effect on protopic at all.

I've taken oral steroids recently and they don't seem to have much effect on protopic induced inflammation. I have to take a large dose (30mg or so a day) before I see a reduction in swelling on my eyes and genitals.

Also, like daisy2, I have used protopic for about a year very heavily on my face, penis and scrotum (and some on the forearms). I stopped 7 months ago on 23 March 2016 and feel like my withdrawal has plateaued. I still have heavy swelling on the eyes and genitals, it itches like mad, flakes and oozes still at times.

Very sad it takes so long to get over and I'm starting to question if it every will. There's little data on it. Thats why it's so important we communicate on here. For our own peace of mind and to help others. Had I read these testimonials two years ago when I was considering using protopic, I would never have touched it.

Offline 997

  • Newbie
  • *
  • Posts: 6
  • Karma: +0/-0
Re: Protopic Withdrawal
« Reply #18 on: October 04, 2016, 10:18:20 PM »
I used protopic and other steroid creams like body lotion. Even if it wasn't required cause I thought if I used it everywhere I wouldn't have any skin issues. How stupid is that!!! I had to stay off all creams before I started Dupilumab and let me tell you I was a hurting unit. I had a full body flare, Could barley move, and worst of all I could Yardley see cause my eyes were so blurry. Dupilumab is a miracle drug and hopefully they put it on the market soon. I pretty scared to see what I would look like without the 💉.

Offline Stinkers

  • Semi-Newbie
  • **
  • Posts: 39
  • Karma: +1/-0
Re: Protopic Withdrawal
« Reply #19 on: October 05, 2016, 09:38:13 AM »
That's interesting. My local dupilumab study wanted me to use creams before I went on the drug as they said I needed clear skin at the start of the trial. I didn't agree to those conditions as I was already about four months into withdrawal.

So for the sake of clarity, you used protopic all over. Now you're on dupilumab, areas where you used protopic are not clear of inflammation, and only sensitive areas like your eyes and face are still showing signs of inflammation?

Offline 997

  • Newbie
  • *
  • Posts: 6
  • Karma: +0/-0
Re: Protopic Withdrawal
« Reply #20 on: October 05, 2016, 11:23:20 AM »
Yes! I have no eczema, redness or inflammation anywhere else but my face. That's funny how some people had to go into the Dupilumab trial differently. Some people had to be off steroid creams while others needed to stay on them.

Offline Janna Marie

  • Semi-Newbie
  • **
  • Posts: 58
  • Karma: +1/-0
  • Gender: Female
  • Jesus Christ is my strength and hope each day!!!
Re: Protopic Withdrawal
« Reply #21 on: October 05, 2016, 11:50:19 AM »
You are not allowed to view links. Register or Login
Hi guys,

Very interesting dupilumab doesn't seem to have the same impact on protopic withdrawal!!

997 - did you use protopic on any other areas of the skin besides those you mentioned are still flaring? I'd like to know if areas of lesser usage of protopic have been moderated by dupilumab and its just sensitive heavy use areas like the face that haven't, or if you think it's had no effect on protopic at all.

I've taken oral steroids recently and they don't seem to have much effect on protopic induced inflammation. I have to take a large dose (30mg or so a day) before I see a reduction in swelling on my eyes and genitals.

Also, like daisy2, I have used protopic for about a year very heavily on my face, penis and scrotum (and some on the forearms). I stopped 7 months ago on 23 March 2016 and feel like my withdrawal has plateaued. I still have heavy swelling on the eyes and genitals, it itches like mad, flakes and oozes still at times.

Very sad it takes so long to get over and I'm starting to question if it every will. There's little data on it. Thats why it's so important we communicate on here. For our own peace of mind and to help others. Had I read these testimonials two years ago when I was considering using protopic, I would never have touched it.


Stinkers,
I thought that I would weigh in here as well., because it is important that we communicate on here.  I used Protopic very heavily on my face almost daily for 10 years.  Even though I stopped TS 3 years and 6 months ago, I only fully stopped PT 1 year and 6 months ago.  I initially stopped using it at the same time as I did the steroids, but began using it again after 9 months, only on my face, neck, hands and forearms, and behind the knees.  A lot of my body is doing much better, though still extremely dry.  But, my face and neck have been in a constant and horrible flare since I fully quit PT.  And the symptoms there are as others in PT withdrawal have described: intensely dry and peeling, open cuts and oozing, and continuous itching.  Also, every area where I used PT in the middle of my TS withdrawal is still flaring pretty badly.  I know that this is not coincidence and was the result of PT use.  I too, struggle with wondering how extensively PT damages the skin, and whether the effects are different than steroids, as in more permanent.  It's a scary thought.  But as you said, there is so little data on PT, and it is such a new drug.  We don't how just how dangerous it is.  But I believe it is very dangerous, and I also wish I had never touched it.  Hmmm... what's in the past is in the past; we can only move forward.  I pray that PT withdrawal will finally come to an end for us all!
 :rainbow2:
"For God so loved the world, that He gave His only Son, that whoever believes in Him should not perish but have eternal life."
~John 3:16~

Used moderate to strong TS for 20 years, Protopic 10 years, Prednisone injections and orally, treated for Hodgkins Lymphoma in 2008, off TS since January 2013!

Offline Stinkers

  • Semi-Newbie
  • **
  • Posts: 39
  • Karma: +1/-0
Re: Protopic Withdrawal
« Reply #22 on: October 05, 2016, 02:53:52 PM »
So based on 997's input, Dupilimab is still effective for protopic withdrawal, only the level of inflammation caused by PT is so severe in places even a miracle drug like Dupilimab isn't able to control it.

It's also interesting that the inflammation pathways in both protopic addiction and steroid addition (interleukin 4 presumably) are the same despite one compound being steroidal and the other now. I suppose the method of addition is different in each case but the net results are the same inflammatory bodies. It's a really good clue to start a proper study into the underlying cellular biology which causes RSS.

Janna - I'm sorry to hear your story. The only thing I can think of is that my skin has definitely improved on my face and body since I stopped using PT. Particularly over the first three months and less so now. I don't see why it would choose a random level of inflammation to be stuck at, therefore I presume over enough time the skin will eventually revert to a non-inflamed state. That's a pure logic argument with no science behind it.

I wonder if these drugs alter our genetic expression and that's what takes so long to recover from. The half life means it washes out pretty quick, and even if it was a case of waiting for various cyclic systems in the body to synchronize again I can't see that taking so long. I had a genetic profile taken at the start of my RSS sa part of a research effort to look for genetic factors behind full body dermatitis (morons). It would be interesting to see if anything has changed at the end of my RSS journey.

Finally, when you guys came off PT, did you get any fissures on your hands, and did they have any distinctive features?

Thanks in advance - Sam

Offline daisy2

  • Semi-Newbie
  • **
  • Posts: 90
  • Karma: +0/-0
Re: Protopic Withdrawal
« Reply #23 on: November 05, 2016, 04:35:27 PM »
Hi Sam,

I have fissures that have a hard time healing on parts of my face (again where I used protopic exclusively), especialy my chin.

Daisy

Offline Janna Marie

  • Semi-Newbie
  • **
  • Posts: 58
  • Karma: +1/-0
  • Gender: Female
  • Jesus Christ is my strength and hope each day!!!
Re: Protopic Withdrawal
« Reply #24 on: November 27, 2016, 10:41:36 PM »
You are not allowed to view links. Register or Login
So based on 997's input, Dupilimab is still effective for protopic withdrawal, only the level of inflammation caused by PT is so severe in places even a miracle drug like Dupilimab isn't able to control it.

It's also interesting that the inflammation pathways in both protopic addiction and steroid addition (interleukin 4 presumably) are the same despite one compound being steroidal and the other now. I suppose the method of addition is different in each case but the net results are the same inflammatory bodies. It's a really good clue to start a proper study into the underlying cellular biology which causes RSS.

Janna - I'm sorry to hear your story. The only thing I can think of is that my skin has definitely improved on my face and body since I stopped using PT. Particularly over the first three months and less so now. I don't see why it would choose a random level of inflammation to be stuck at, therefore I presume over enough time the skin will eventually revert to a non-inflamed state. That's a pure logic argument with no science behind it.

I wonder if these drugs alter our genetic expression and that's what takes so long to recover from. The half life means it washes out pretty quick, and even if it was a case of waiting for various cyclic systems in the body to synchronize again I can't see that taking so long. I had a genetic profile taken at the start of my RSS sa part of a research effort to look for genetic factors behind full body dermatitis (morons). It would be interesting to see if anything has changed at the end of my RSS journey.

Finally, when you guys came off PT, did you get any fissures on your hands, and did they have any distinctive features?

Thanks in advance - Sam


You're right, it doesn't seem like it would just get stuck at a random level...  I have been thinking that maybe the Protopic somehow drastically increases our eosinophil counts in our skin tissue, since the flares seem to be localized to wear we applied it.  I've also wondered if there could have been something altered in our genetic profile, but I really hope not.  It seems like that would be very hard to sort out.  :sad:  If you get tested again, I would be interested to hear your results after you heal.   

Regarding fissures... I am not exactly sure what you are referring to, but I do have very deep lines, almost like wrinkles all over my hands, especially my wrists.
"For God so loved the world, that He gave His only Son, that whoever believes in Him should not perish but have eternal life."
~John 3:16~

Used moderate to strong TS for 20 years, Protopic 10 years, Prednisone injections and orally, treated for Hodgkins Lymphoma in 2008, off TS since January 2013!

Offline Joey VanDyke

  • Administrator
  • Hero Member
  • *****
  • Posts: 1557
  • Karma: +2/-0
  • Gender: Female
  • This too shall pass~
    • Red Skin Syndrome
Re: Protopic Withdrawal
« Reply #25 on: February 27, 2017, 11:34:11 AM »
We have seen several members have side-effects to the topical immunos and some say it can be just as bad or worse than steroids. The vets who did have these problems have since gotten better and left the forum as most who recover, do. There is a Facebook group that branched off this one to one for those who use Facebook more that you may be interested in as some of the ones who use Protopic were active in that one. Best to you all!  :thumb up:

You are not allowed to view links. Register or Login
Started TSW 9-2010- fully healed at 62 months. :)

You are not allowed to view links. Register or Login

Offline Janna Marie

  • Semi-Newbie
  • **
  • Posts: 58
  • Karma: +1/-0
  • Gender: Female
  • Jesus Christ is my strength and hope each day!!!
Re: Protopic Withdrawal
« Reply #26 on: March 02, 2017, 11:58:00 PM »
You are not allowed to view links. Register or Login
We have seen several members have side-effects to the topical immunos and some say it can be just as bad or worse than steroids. The vets who did have these problems have since gotten better and left the forum as most who recover, do. There is a Facebook group that branched off this one to one for those who use Facebook more that you may be interested in as some of the ones who use Protopic were active in that one. Best to you all!  :thumb up:

You are not allowed to view links. Register or Login

Thank you so much, Joey!!!  This is very encouraging for those of us who just seem to be stagnant in so many areas!  Thank you for encouraging us to keep hoping!  :heart: :rainbow2: :heart:
"For God so loved the world, that He gave His only Son, that whoever believes in Him should not perish but have eternal life."
~John 3:16~

Used moderate to strong TS for 20 years, Protopic 10 years, Prednisone injections and orally, treated for Hodgkins Lymphoma in 2008, off TS since January 2013!